Genetics and Ethics in the Obama Administration | Alondra Nelson || Radcliffe Institute


[MUSIC PLAYING] – Good afternoon, everyone. I’m Tomiko Brown-Nagin, the
dean of the Radcliffe Institute for Advanced Study
here, at Harvard. Welcome to the annual Kim
and Judy Davis Dean’s Lecture in the Social Sciences. This year, featuring
Dr. Alondra Nelson, president of the Social
Science Research Council and professor of sociology
at Columbia University. I’m delighted to have
Alondra here with us today, and thrilled that all of
us have the opportunity to hear from her. Let me extend a special welcome
to Kim Davis and members of the Radcliffe Institute
Leadership Society, as well as our generous
annual donors, who make the work of the
Institute possible. Thank you for your support Alondra Nelson is
an acclaimed scholar and distinguished
leader both in academia and in the world of policy. She’s also a respected
public intellectual, who frequently devotes
her intellectual firepower to advancing racial
and social justice. Alondra pushes her
fellow social scientists to be similarly engaged with the
world, encouraging researchers, to quote Alondra, “ask
the hard questions about the public good. Reach new audiences,
and communicate effectively and emphatically.” Alondra’s own scholarly work
in women and gender studies, as well as
African-American studies, sits at the intersection of
science, technology, medicine, and inequality. She investigates
how science shapes the world we inhabit, exploring
questions of identity, collective action,
and our engagement with scientific
conceptualizations of race, ethnicity, gender,
and much more. Alondra’s latest
book, The Social Life of DNA, Race, Reparations,
and Reconciliation After the Genome, results
from a decade plus of ethnographic research
on direct to consumer genetic ancestry testing. Beginning in the early 2000s,
long before ancestry tests became mainstream, let alone
advertised as holiday gifts, Alondra set out to learn
why people take them and what they might
tell us about who we are and who others think we are. In particular, she wondered
why African-Americans were among the earliest
adopters of this new technology. The Social Life of
DNA explains how individual genetic
information gathered from take-at-home tests became
a socio-political catalyst. Newly accessible genetic
data have not only been used for ancestral
roots seeking, but also to expose aspects
of societal amnesia around American slavery. Some African-Americans turned
to the test to reckon with, to quote Alondra, “the
unfinished business of slavery and its lasting shadows
of racial discrimination and economic inequality.” Yet, as she cautions, “DNA
can offer an avenue towards recognition but cannot
stand in for reconciliation, which encompasses voice,
acknowledgment, mourning, forgiveness, and healing.” Alondra’s earlier
award winning book, titled Body and Soul, the Black
Panther Party and the Fight Against Medical Discrimination,
examines a related set of issues through the lens
of the little known health activism of the Black Panthers. In Body And Soul, Alondra
tells the fascinating history of the Black Panthers’
community clinics, including the country’s first
grassroots genetic screening program, which was set up to
test for sickle cell anemia. Currently, Alondra is
at work on a new book on science and technology policy
in the Obama Administration. And it is the subject
of her talk today. Alondra began her teaching
career at Yale University after earning a PhD
in American Studies from New York University. Since 2009, she’s
been on the faculty at Columbia, where
she’s also served as director of the Institute
for Research on Women, Gender, and Sexuality. Inaugural dean of social
science and founding co-chair of the Precision
Medicine and Society Program, she also spearheaded Columbia
University’s participation in the Obama Administration’s
collaborative to advance equity through research. Today, as president of the
Social Science Research Council, Alondra leads national
and international efforts to advance research
for the public good and works to mobilize
scholarship and resources to tackle pressing questions
with implications for policy, equity, science, and much more. It’s hard to imagine a better
person for this critical work and for today’s lecture. And now, please join me in
welcoming Alondra Nelson to the stage. [APPLAUSE] – Thank you so much,
Dean Brown-Nagin, again, for that incredibly
generous introduction. And special greetings
to a few people. I was so happy to have so
many dear friends here. I want to thank, as
I begin, Kim Davis. I’m delighted to be here
under the auspices of the Kim and Judy Davis Dean’s Lecture. I want to send special greetings
to Daniel Carpenter, who I know plays a special role here
at the Radcliffe in the Social Sciences. And I have to say, those of
you who study bureaucracy or the state, as I am trying
to do for the very first time, we would be completely
lost without Daniel and without his work on the FDA
and other regulatory capture and the like. Greetings to Marina
Whitman, who is a member of the SSRC
advisory board visiting committee, who’s here and,
I think, a Radcliffe alum. And also to two of the
most important mentors in my life, Evelyn Hammonds
and Patricia Williams, who I’m delighted to see
and who have supported me, quite literally, for decades. I think I wouldn’t have tenure
without either of them, truth be told. So I’ve been busy doing
administrative work. But I think one must
always do our research. It’s the thing that brings
us to graduate school. It’s the questions that
we have about the world. So I’m working at a more glacial
pace than would be desired. But I am working,
nonetheless, and have been spending about the
last year and a half talking to staffers in
the Obama Administration, starting mostly with
junior staffers who worked, many of them,
across the whole eight years of the administration,
and continuing forward. So I’m going to
tell you a story– I think that’ll be a wistful
story for some of you– about the recent past and
give you some ideas about– it’s too soon to, I think,
make any proclamations about the legacy of the
Obama Administration. But I just want to
make some gestures about what I think
was particularly important with regards to
that administration’s work with science and technology. So I told you it’d
be a little wistful. Here are two images. One of the very
first magazine covers of the Obama era, Paging
Dr. Obama, obviously, a Time cover about the
Affordable Care Act and all of the controversy
and political debate that would come with it. And his very last cover
from Popular Science, in which he did an
interview summing up his work in the administration,
in particular, talking about science. So in that arc, from the
beginning to the end, it’s easy to gather
data, if one looks, about how this was
probably one of the most extraordinary experiments in
federal science and technology policy. And I’m going to offer you
a few data points, to begin, for why that’s the case. But my talk will
really be about what is a hidden facet of this
work, the ethical framing that I think is important. So this is Obama pictured
with his science advisor, John Holdren, your colleague here. And it’s really probably not
since the influential tenure of Vannevar Bush in the US
Office of Scientific Research and Development in
the mid 20th century, during President Franklin
Roosevelt’s tenure, that science had played
such a powerful role in a presidential
administration. So Holdren was not only director
of the Obama Office of Science and Technology Policy, he
held two other hats besides. He was co-chair of the
Presidential Council on Science and Technology,
PCAST, in addition to being OSTP director, and led
a national council, as well. So it’s little clear to see
here than it is on my screen. So this is the configuration
of the Obama Science OSTP. Holdren held the
top three roles– OSTP director. He was a co-chair of the
President’s Council of Advisors on Science and Technology,
or PCAST, as well as the Chair of the National
Science and Technology Council. So in other administrations,
different people had held all of these roles. Holdren held them
simultaneously. You’ll also see that
the OSTP built out lots of different work
that included the STEM fields, energy science,
climate science, cybersecurity, and the like. And a phrase that came up often
in folks that I talked to, who worked in the OSTP, was
that science touches everything. So this was a kind of
ethos of the Obama OSTP. Part of the reason why Holdren
and other people working in the administration
would be dual hatted or tri-hatted it in their
positions in the administration was because they felt
like there needed to be an expansive and
capacious way to how they thought about doing their work. So PCAST, this
Presidential Council of Advisors on Science
and Technology, were external advisors. These included folks like
Eric Schmidt of Alphabet, Rick Levin, then president of
Yale who went on to Coursera. And you can see
that in their work, they did some of the work that
gave framing and shape to some of the important initiatives
of the Obama Office of Science and Technology Policy. So big data, K to 12 STEM
education, health care, and health care information,
data informatics, and the like. So Holdren would
co-chair this entity with Eric Lander
and Harold Varmus. More generally, the
Obama Administration appointed many
prominent scientists to his administration
and to advisory boards, including five Nobel
laureates and 28 members of the National Academies
of Sciences, Engineering, and Medicine. Moreover, this PCAST
was more active than any of their predecessor
bodies in the three prior presidential
administrations. So they, over eight years,
published 36 publications, like these here. By comparison,
there were about 12 in the former W.
Bush Administration. There were 46 meetings
over eight years. By comparison, there were 30,
21, and 20 in the prior three administrations. And for the first
time, members of PCAST were given security clearances. So they could offer
advice to the president and his administration
on cybersecurity and other important,
sensitive issues. So this was one facet of the
way that the Obama science apparatus– the way
federal science under Obama was distinctive in the way
that it was put together. Also distinctive was that
over the course of the eight years of his presidency, Obama
published 13 journal articles. Many of these were
advocacy articles. They’re not putting
us all to shame. They were commentaries. So Harvard Law Review,
New England Journal of Medicine, Journal of the
American Medical Association, Nature and Science,
just to name a few. So these are just
examples from late in his administration,
where he’s trying to make the case
for all that they did. He’s tired. He’s saying these are all
the things that we did, including, notably, the
commentary from the Harvard Law Review on criminal justice
and the important work that his OSTP would do
around forensic science. This would be the
last paper that he would publish in Science, making
the case for energy policy, certainly in the weeks
before the Paris Climate Accord would fall apart. Then there was the euphoria
of the Obama Administration. That was also distinctive. So he brought to the White House
for the first time the White House Science Fairs. They ran to really
celebrate the winners of local and regional STEM
and science competitions in K to 12. And they ran from 2010 to 2017. And they, since, are
no longer going strong. So here’s young Obama
with not so much gray hair with a young boy
with a projectile. Older Obama holding a model
of a flu bug in his hand at one of the later
science fairs. So he would inaugurate
them working with a gentleman named Kumar
Garg, who worked for eight years in the Obama OSTP. And this would be
distinctive, as well. So we got a sense of how
distinctive the Obama approach to science was. Because with the establishment
of the Trump Administration, it became very clear. So just to think about
the staffers in the OSTP, at its height, there
were 143 staffers. And when the Trump
Administration was established and
came to the White House, there were about 30 staffers. And I think now,
there are about 40. So it also gives you a scale
of the investment and staffing. What I want to suggest
to you this afternoon is that there’s a less
obvious impact, or influence, or something distinctive
about the Obama OSTP, and this particular federal
approach to science, which was a kind
of ethical framing. So I’m taking this up as
a way to frame a larger project, which is a book project
that will be about moonshots. I’m working on moonshots in
the Obama Administration. That will include the BRAIN
Initiative, white papers and initiatives on Big Data and
AI, the first national Nudge unit, Social and
Behavioral Research Team, taking place in the White House. Precision Medicine, which
I’ll talk about today, and the Cancer Moonshot. And in discussing
this, as I said, I’ll draw on some of the
interviews I conducted, as well as content analysis,
my own experience, and one of the ethical framing
performances of the Big Data and AI, as well as
quite a few of Obama’s speeches, as you’ll see in
his own presentation of self with regards to
ethics in science. So the moonshot,
of course, comes from a famous speech at Rice
University in Houston, Texas, September, 1962. John F. Kennedy
ascended a podium in front of a large crowd
gathered at a stadium, at Rice. And he really made
the case for the goal of sending rockets and
men to the moon, the goal of technological innovation,
and the aspiration to use federal funding
and federal human capital to do this in a limited
time frame of two years. He says “but why,
some say, the moon? Why climb the highest mountain? We choose to go to the
moon in this decade, not because it will be easy,
but because it will be hard.” The moonshot, of course,
has been taken up in other parlance. Of course, one of the Obama big
initiatives launched in 2016 with Vice President Joe Biden
leading it is a $1.8 billion investment in cancer research,
called the Cancer Moonshot. It’s also the case that
the moonshot, today, is understood as being any
kind of ambitious project. The moonshot is used
to talk about what was called Google X, now
X, an incubator project for innovative science
and technology. But it should be noted here that
the Google Moonshot are really about a problem to a project
to design to a particular kind of outcome. That makes them a
little bit different from the federally funded ones. So I want to suggest to you
that throughout the course of this administration, and
even in his time as senator, that President Obama very
much understood, I think, two things. And we see them as
well in his memoir. Sort of the sense
that science was going to be important to his
administration, for reasons that I will say a
little bit more about. But I think in his person
and also in his presentation of self, as I said, it
was very important for him to always give voice to the
ways in which science had failed and had been used
for pernicious ways. So this is him from
a speech in 2016. He’s the first sitting
president to visit Hiroshima, notably not to make an
apology, but to give a speech. In this speech, he says,
“technological progress without an equivalent
progress in human institutions can doom us. The scientific revolution that
led to the splitting of an atom requires a moral
revolution, as well.” Early in his administration,
you may recall, he was asked to
be a commencement speaker at Notre Dame. And it was highly
controversial, because he was an explicitly pro-life
candidate and also a candidate who was
committed to advancing, to a limited degree,
stem cell research, which was a contrast with the prior
administration of George W. Bush. So part of what he says
in his speech that day, in May of 2009, is “let us be
sure that all of our health care policies are grounded
not only in sound science but also in clear ethics.” So I want to demonstrate
today that the sort of ethical terrain that Obama
and his administration endeavor to work around and through
is dealing with the past and really having to
reckon with the past. They have to overcome
citizen skepticism related to the history of
experimental abuse. They have to establish
ethical regulations, in part, so new science, new
moonshots can go forward. And they have to
generate a perception of ethical forethought. That the moonshots that
they are proceeding with have been thought about, that
these are considered moves. And in this way, they are
distinctive from someone like Vannevar Bush, who
I mentioned earlier. In the historical archive,
in the secondary literature about Bush and about
the Manhattan Project and the formation of what
would become the atom bomb, there are, I think,
poignant reflections on this from folks
like Oppenheimer, only a few years later. What was striking to me about
the historical record on Bush is that there was never a
sense in his conversations and in his work,
and certainly, not in this masterful biography
from Pascal Zachary, that they thought they
should had to ask anybody. That there was any
sense of accountability on the part of Bush,
although it might have not been true of others on the
Manhattan Project team, that there was anyone that had
to be engaged in this process. And moreover, in some
cases in the biography, Zachary writes about Bush
being asked whether or not there should be any kind
of what we might call today ethical engagement
or conversation about whether or not
this would proceed, and found it
utterly unnecessary. So part of what we’re seeing
here, I want to suggest, is the creation and
extension of an ethical frame that a few decades
prior, and certainly a few presidential
administrations prior, did not exist. And I’m going to
track this for you in a few ways, this afternoon. First, beginning with the
formation of the ELSI Program that emerges alongside the
Human Genome Project in 1990. So the Human Genome
Project begins. And soon after, there
is a working group that would become a project
on the ethical, legal, and social implications
of that project. Its original mandate included
identifying and defining issues that were related to the
Human Genome Project, policies for addressing
them, with 3% to 5% of the annual Human
Genome Project budget. And this has been
discussed in some quarters as the largest ethics
project in human history. So I want to bring
to our attention that initially,
the ELSI project– the Ethical, Legal,
and Social Implications of the Human Genome Project– was actually quite
broad and capacious. That it covered a
lot of territory that it would not
cover in the end, highlighting a little bit
here, for you Privacy and fair use of genetic
information with respect to employers and insurers, but
also direct marketers, banks, credit raters, law enforcement
agencies, and many others. The availability of large
amounts of genetic information and largely
unprotected databanks, possible discriminatory
misuse of genetic information, and the fact that the use
of genetic information and genetic screening could
exacerbate the creation of a genetic underclass. But by 1991, the scope of ELSI
is significantly narrowed. So the issues here are
privacy and fair use of personal genetic information,
genetics in the workplace, and genetic education. So you continue to see articles
like this in the Human Genome News, which was the official
newsletter of the project. But what we might call the more
radical interpretations of what ELSI might have
been, and its ability to not only be downstream,
as critics of ELSI would come to say,
but also anticipatory in thinking about how
genetic data might be used in the marketplace, for
example, for purposes of bias and discrimination are shaved
off of the scope of this work. So even though the work narrows
from this initial mission, from this to this,
it also expands. So by the early
aughts, ELSI has gone from being a project
that runs in parallel, an ethical analog to the
Human Genome Project, to also being part
of a conversation about nanotechnology. So it’s expanding from
the Human Genome Project to nanotechnology. Paul Rabanow and Gaiman
Bennett, in 2012, publish a fascinating, poetic,
sometimes confusing book– but a very interesting
book on their engagement and trying to be an ELSI
partner for synthetic biology as it’s emerging,
a few years later, in the early 20th century. So what we can track
if we follow even the narrow ELSI is
a sort of expansion of an ELSI frame from
the Human Genome Project to nanotech synthetic
biology and other forms. So those of you who work
in the life sciences know that there’s pretty
much the ELSI of everything. Any project that you
do can and often must, depending on who’s funding
it, have an ELSI component. And I want to argue
that by the time we get to the Obama
administration, there’s been a full
sail ethical turn, such that to do federal
science means to be expected to have some forms
of accountability and to be able to at
least perform answers to certain questions about
the implications of moonshots. So ELSI is one
origin or one pillar of why I think this
ethical framing comes to be prominent in the
Obama administration. And another is
the administration that preceded it. So here’s Obama pictured
again with John Holdren. Holdren, whom he appoints
before he becomes president– so to give you a comparison,
George W. Bush didn’t nominate and then have
appointed his first director of the Office of Science
and Technology Policy until almost a year
into the administration. And we know, of course,
that President Trump did not nominate someone until well a
year into his administration. So it was really uncommon
for someone to be nominated before a new president
even takes office. And it’s certainly
the case that, as I said, early in his
administration, indeed, here in his inaugural
address, Obama places front and center his
commitment to restoring science to its rightful place
in his administration. Part of what that
meant was a reaction to what they understood
Obama and many of his science advisors to have been– a politicized
bioethics that emerged by conservative ideologues
during the Bush administration. For them, that was really summed
up in the case of Terry Shiavo. You’ll see on her
gravestone, here, that was commissioned
by her husband. She departed this earth
on February 25, 1990, and was at peace in March, 2005. So between 1990 and
2005, of course, there is a contest
between her husband, who said that to abide
by her wishes would be to allow her to depart
this earth in February, 1990, and her parents, who
insisted on keeping her in a vegetative state. And then all around, a
raging public discourse about the right to
life and the way in which this
controversy was abducted into that conversation. So as a senator,
Senator Obama is already engaged in trying
to think about how to think about the relationship
between religion and science or religion and reason. This is a speech that he gives
in 2006, in Washington DC, in an ecumenical
religious forum. He says, “I do not believe
that religious people have a monopoly on morality. I would rather have someone
who is grounded in morality and ethics, and who is also
secular, affirm their morality, and ethics, and values without
pretending they’re something that they’re not.” So part of a group of people, a
group scholars– bioethicists, in particular– galvanize around a project that
they call Science Progress. And some of them
would personally identify in
contradistinction to those who were the bioethicists,
who understood themselves to be conservative, as
progressive bioethicists. So two exhibits, A and
B, from that time period are these books edited
by Jonathan Marino, a prominent
bioethicist who teaches at the University of
Pennsylvania, at present. But at the time, he was a
senior fellow and the founder of the Science Progress
Project at the Center for American Progress. And here, you see the
kind of ELSI frame and a bioethics frame expanding
broadly just in these two edited collections. So you have more than
the life sciences, here. They’re talking about progress
in bioethics and ethics frames around electronic medical
records, solar energy, broadband, neuroscience, and
organizational innovation. So the expansion of
this ethical framing is happening here,
among other places. The Science Progress Project was
launched under the presidency of John Podesta, who
had been chief of staff under the Clinton
Administration, and was allowing these
bioethicists to galvanize and create programming and
strategy around what they would want to do when the
administration of George W. Bush and the conservative
bioethicists who were advising him would move on. So what’s interesting
here are, I think, claims that are
not always associated with the left. So Science Progress
understood that coming out of the era of social movements
of the ’60s and ’70s, that science had to
be participatory. That it was
inherently political. It was a project of progressive
science policy, as I said. And they also
understood or wanted to assert that one could
combine ethics and innovation and ethics and reason, and
that these things were not diametrically opposed. And this was part
of the particularly progressive framing that
they wanted to advance. So I should say that Marino,
the co-editor of both of these volumes, the leader
of the Science Progress Project at the Center
for American Progress, would be a member of
Obama’s transition team from 2008 to 2009. John Podesta, who played a
role here, as well, by 2014, is working in the
Obama White House and is working on many
of the moonshot launches, including the launches of
the AI and Big Data projects that happen around that time. So as I mentioned,
it’s also the case that Senator Obama
was engaged in issues around genetics and ethics. So in 2006 and also
in 2007, he introduces with Republican Senator
Richard Burr of North Carolina the Genomics and
Personalized Medicine Act both of 2006 and 2007. And versions of
this act would be introduced by other legislators
after Obama entered the White House. But this was very much front
and center for him and his time, in his few years in the Senate. So what this act endeavored
to, in its words, “improve access
to and utilization of valid, reliable
genetic tests, and to secure the
promise of personalized medicine for all Americans.” So while neither
President Obama’s bill nor the subsequent versions
from him and other legislators were ever enacted,
much of what was here was ultimately incorporated
into the 21st Century Cures Act that was signed by President
Obama, in December of 2016, towards the end
of his presidency. In this 21st Century
Cures Act, some of you might know, include not
only the $1.8 billion for the Cancer Moonshot
that I mentioned, but also $1.5 billion
for precision medicine, for its infrastructure, and
for the larger project of it. Notably, Obama would note
that it was important to him that ethical
guardrails were placed around the issue of
personalized medicine before it could move forward. So here is a report
from the GINA Act, which I’ll say a little bit more
about– the Genetic Information Nondiscrimination Act of 2008. And his reaction to it,
according to a staffer, was that Obama
said that he wanted to do the genomics bill,
this act of 2006 and 2007. But that he didn’t
want to go anywhere with it until GINA passes. Sort of the sense
that we had to have some sort of protective
regulations in place before one could move forward. So the GINA Act, of
course, in short, was signed into
law by George Bush and enacted in November, 2009. It protects against the
use of genetic information to discriminate in the
provision of health care and also with regards
to employment. So moving forward
to January, 2015, when President Obama, in the
State of the Union address, would announce a $215
million investment. Later, by 2016, as I’ve just
mentioned, in this 21st Century Cures Act, the total investment
would be $1.5 billion to launch this
Precision Medicine Act. So he said, “tonight, I’m
launching a new Precision Medicine Initiative to bring
us closer to curing diseases like cancer and diabetes.” And I want to also
highlight this second part. “And to give us all access to
the personalized information we need to keep ourselves
and our families healthier.” So on the one hand is
research investment. On the other hand, a recognition
that will become clearer as I go on about the role
that he’s trying to create for the individual,
citizen, consumer, patient in a Precision
Medicine Initiative. So in brief, the Precision
Medicine Initiative is a research endeavor
that aims to understand how a person’s genetics,
environment, and lifestyle can help to determine the best
approach to prevent or treat disease. Short term goals,
as announced by NIH, include expanding
precision medicine in the area of cancer
research and to increase knowledge of genetics and
the biology of cancer. A long term goal, bringing
precision medicine to all areas of health and
health care on a large scale. But all of this faced
some of the hurdles that I mentioned, previously. So just to repeat
these, they needed to overcome citizen
skepticism related to the history of
experimental abuse. They needed to establish
some ethical regulations. And the GINA Act of 2008 was
a first step in doing this. And also to generate
a perception of ethical forethought. So I’m going to talk a little
bit about one and three, now. So Obama announces
on January 15, 2015, in the State of the Union
address, the Precision Medicine Initiative. And about two weeks later,
he has a launch event in the east room
of the White House. And here, you see one of the
things he does again and again, which hearkens back to, some
ways more or less explicitly, a history of abuse. That would give
people misgivings about precision medicine. And tries to encourage people
that they should move forward. So he says here at this launch,
“we’ve got to figure out, how do we make sure that if I
donate my data to this big pool that it’s not going
to be misused? That it’s not going to be
commercialized in some way I don’t know about? And so we’ve got to set up
a series of structures.” So part of the
structures was a series. This is a fascinating
document on privacy and trust principles. At its most radical,
it’s asserting a right to citizen science, a right
for individual consumers to be able to use their
genome, and to have access to the information that
their genetic information and genetic data might provide. It asserts a strong
right to privacy. It asserts a 21st
century version of a patients’ bill of
rights or research subjects’ bill of rights. It’s a very
aspirational document. And indeed, it’s a document
about any legal bearings. So it’s kind of all aspiration. But it’s a very interesting
historical document that, I think, we’ll be
talking about for a long time. Because it very much
bears the imprimatur, I think, in some ways, of many
of the kind of Silicon Valley diaspora that come to work in
the Obama administration, that take pay cuts, who very much
believe in the work that’s being done here to advance
science and technology policy. And bring with them a very
kind of romantic idea of what science and technology can do. Another quote from Obama that
gets him in trouble, “I would like to think that if someone
does a test on me or my genes, that that’s mine. But that’s not always how
we define these issues. So there’s some legal
issues involved, as well.” So within a few hours,
The New York Times is talking about how
the president weighs in on data from genes. Because as many of us
know, your genomic data does not belong to you. Someone captures
it in a laboratory. And indeed, George
Contreras, who’s a law professor at the
University of Utah, who I interviewed recently, who
went to law school with Obama, here at HLS, writes this
rejoinder to President Obama. That says in part, “US
courts have repeatedly denied individual censorship
claims over data derived from their cells and tissue. Just imagine the
chaos that would ensue if each of the million
participants in the Precision Medicine Initiative
could claim ownership over discoveries that were
made after large pools of DNA were analyzed.” So imagine, indeed. So President Obama
and his staff realized that they had to, for all
sorts of reasons, sell it. So this is, as
far as I can tell, the only of their big projects
that had two launches. So there’s the
January 2015 launch. That’s a couple of weeks after
the State of the Union address, in which Obama launches this. Then there’s a
summit a year later. Which he engages
researchers, the woman here, from the Broad Institute,
research scientists to talk about, in a public way– this was streamed– what the
Precision Medicine Initiative might be able to accomplish. But also to give voice
from the perspective of patients, consumers,
health care economists– what some of the
challenges might be. So there’s lots of conversation,
most of it initiated by him about
privacy fears, about fears of genetic
discrimination, about the need for new safeguards,
and also the need for more nimble
regulation if something like precision medicine should
take off in the United States. Actually, I think
this is fascinating. It’s 42 minutes. It’s really interesting,
because President Obama is on the stage with
actual scientists and takes it upon himself
to talk about the science. So there’s also this odd– as someone who really admires
expertise, as he does, he’s also very learned
and very much wanted to demonstrate that
he had learned quite a lot about genome wide
association studies, and the need for
diverse databases, and all these sorts of things. So it’s a fascinating
performance of the ethical framing
that I’m talking about. And also, it’s an interesting
Obama presidency moment. So part of what they’re talking
about in this conversation is anticipation of a facet
of the Precision Medicine Initiative called All of
Us, which is an endeavor to recruit 1 million volunteers
from around the United States to provide genetic data,
biological samples, and other health information. Because the genetic data is not
useful without the other health information. And also to encourage
open data sharing. So there’s this open
science, citizen science piece of this that remains. Volunteers will
be able to access their health information
as well as research that uses their data. So as President Obama would
suggest in this conversation, this summit at
which, again, they’re really trying to sell people. And they’re trying to
get people to overcome their skepticism,
variously, about why this should go forward. So they’re really selling
it at this second summit. It’s important that these
be, as he describes, diverse databases. And so the face
of all of us often looks something like this. We need a million person
database that, quite frankly, is probably over sampled
for people of color, if the sort of types of
big data analysis that wants to be accomplished
can be accomplished, there. And this remains
a central issue. This is an article that a
colleague, Maleeha Fullerton, published with a
colleague in Nature, called Genomics is
Failing on Diversity, about the lack of diversity
in genetic databases. That really gave a sense
of urgency to the All of Us initiative. If it’s the case that we need
to have more diverse databases, how are we going to get there? This is data from
the same article about the bias, with
regards to genetic samples that they’re significantly
majority genetic samples of European ancestry,
that have, obviously, analytic implications for
the import of the work if precision medicine works,
and if this Precision Medicine Initiative is to go forward. So there’s a kind
of fever to get these more diverse databases. It’s also part of
the express mission of the All of Us Initiative. But all of this is
occurring against a backdrop in which other things
with data are happening. So Nancy Secola, in the
Wall Street Journal, in 2013, would name Obama– I call him, for this
talk, the ELSI Presidency. She calls him the Big
Data Presidency, but not because of the PMI. She calls him the
Big Data Presidency because she’s writing
here about the NSA and about the surveillance
infrastructure that the Obama
administration– another thing distinctive to science and
technology in the Obama administration– expanded more
than any administration prior. So all of us in the
Precision Medicine Initiative are happening at a
time where we have a ratcheting up in
public discourse of conversation about big data,
more generally, and concerns about surveillance, both on
the part of a cyber security infrastructure and on the
part of private companies. Such that, this
is from Stat News, by 2017, it’s the case that
we’re being told that in order to advance medicine’s future– and this is an article on
how the NIH is endeavoring through all of us to win the
trust of communities who had been mistreated in the past– as a central challenge to
the work that they’re doing. So this is from that
2015 announcement of the first launch of
the PMI, in the east room at the White House. President Obama pictured there
with Francis Collins, director of the NIH, and Harold
Varmus, who, for a time, was co-chair with
John Holdren and Eric Lander of the President
Council of Advisors on Science and Technology. So this is a moment of
possibility and aspiration, as I said. But it also takes a few years. This is 2015. It’s not really until
late 2017, early 2018, that the real enrollment
for all of us begins. And I should say that
my university, Columbia, working with Mt. Sinai and some other
institutions in New York City, is one of the enrollment centers
for the Precision Medicine Initiative. So what’s also
happening in big data? So this is how Wired chooses
to cover the launch of the NIH All of Us enrollment. The first line here, from
this piece from May of 2018, is about Cambridge Analytica,
and talks about the challenges that the NIH and all of us
will face with the Precision Medicine Initiative, in which
the public is increasingly concerned about data. Washington Post, “NIH
seeks health data of 1 million people,
with genetic privacy suddenly an issue,”
again, from May of 2018. So I want to suggest here
that, as I describe in my book that Dean Brown-Nagin
so generously described, The Social Life of DNA,
part of what is happening with regards to the
Precision Medicine Initiative is that the ways in which
ideas about data and DNA are elaborated in
one social site actually affect how people think
about them in other places. So it is the case, for example,
that people that I interviewed about direct to consumer
ancestry testing would often reference things
like the use of genetics in the criminal justice system. In this case, to exonerate a
man who’d been wrongly in prison for 25 years, who was
exonerated through the work of the Innocence Project,
which has freed just under 300 people over more
than a decade of work. Also happening, particularly
in the new presidential administration, are debates
about whether DNA testing and DNA analysis should be used
to reunite immigrant families in a political moment in
which anti-immigrant fears and anti-immigrant sentiment
in the United States is pronounced. As well as the use of databases
by the criminal justice system without warrants and
other legal regulations being met. So part of what
I want to suggest is that as we move from Obama,
the ELSI President, the Big Data President, and also the
Black President, who I think holds a particular place and
can say particular things about how genetics
might be misused, how data might be misused. But also in the way that
was true of his presidency, allow people to trust him
as his person and a person. Much of this is lost in
the Trump presidency. I think that few could imagine
launching a Precision Medicine Initiative, I think, in the same
way under a Trump presidency. But here we have an initiative
that is moving forward. And it’s moving forward to
an enrollment stage at a time where there are legitimate
concerns about genetics and about data, more generally. So the ELSI frame– that becomes the frame, in part,
for federal science, I argue, in the Obama administration– has faced lots of criticism. As early as 2003, the science
and technology studies scholar, Landon Winter,
who was testifying at a committee on the
ELSI of nanotechnology, would say, “there is a tendency
for those to conduct research about the ethical dimensions
of emerging technology to gravitate towards
the more comfortable even trivial questions involved,
avoiding issues that might become a focus of conflict. People in bioethics
rarely say no.” And one might say the same
of the Obama Administration’s approach to its ethical framing. So while it did give voice
to mistreatment of the past, it did do a kind
of performance that allowed people,
if they wanted to, overcome the skepticism
that they had. They were never meant to be
engagements, conversations, performances, public
events that were intended for people to say no. It was always the case that
the moonshots would proceed. It was always the case
that the moonshots would be funded
almost exclusively through federal
appropriation, in this case. Because Obama’s funding
was blocked in other ways. But they also
knew, as an entity, as an organization, that they
had to have a flight plan. That there had to be some public
performance, some public voice to ethical guardrails
and concerns. We can hope that
as we move forward in thinking about the
ethical turn more generally in US culture with regards to
data ethics, computer science ethics, genetics and
ethics, and the like, that we might hark
back to a time in 1990, where we imagined that an
ethical orientation to science and technology could
be broad and capacious. It could include
unprotected data banks. It could include a
genetic underclass now well in formation, law
enforcement agencies, as well. Thank you. [APPLAUSE] – I’m Nick Patterson I’m a
geneticist and I’ve worked extensively on African-American
medical genetics. And I just wanted to tell
you a small incident, which I think is revealing about the
difficulties of interacting with scientific research
and law enforcement. I was involved in a
cardiovascular study on African-Americans. We were seeking genetic
links to heart disease in the African-American
community. This is something called
the Jackson Heart Study. And it was centered
in Mississippi. The response we got from the
African-American community down there was much
worse than we thought. We got fewer people signed up. And the key thing was
that many, many members of the African-American
community said, if I give
you my DNA, will it be available to law enforcement? And the answer is, under
subpoena, absolutely, yes. Thank you very much. We don’t want to know anymore. So that’s a real difficulty. You have an ethics community
in the White House. You have law enforcement
organizations, sometimes at state level, who aren’t
the least interested in what the White
House is saying. And the whole thing interacts
in very complex ways, often not very advantageous. I don’t really
have a model, here. But I wonder if you have. – Well, I guess one
thing I would say is that it needs to be
OK for people to say no. So I think that we need to be
able to have a conversation in which folks should say no. And there’s not a sense of
entitlement to people’s DNA information is one
thing I would offer. I thought, actually,
you were going to say something
about the Tuskegee Experiment or the Holocaust. These are the kinds
of, particularly in the social science
literature and medicine, stories that come up more
often about people’s refusal or skepticism, about
African-Americans in particular, about
participating in such studies. But the headlines that
I ended with, certainly, when I first started
working with people around contemporary genetics
issues, post-human genome genetics, conversations I would
have with African-Americans– it was certainly the case
that the criminal justice system was mentioned. But there were all sorts of
other fears that people had, as well. I think as we continue to
have these high profile cases in which not only
are folks exonerated– and we should say that something
like the Innocence Project only makes sense in a
society in which you incarcerate 2.3 million people,
many of them without cause. But as these cases come to light
of surreptitious DNA collection by criminal justice authorities,
the use of what people thought were citizen science databases
that they were participating in with other geneticists to learn
more about their families, being used, again, without
subpoena, without a warrant by the criminal justice
system, that it’s only going to get more challenging. So I would say to
you that if you were to go ahead
and do that now, in the face of two summers,
now, of these stories about how pernicious the criminal
justice authorities have been and their use of
these open databases, that your yield
would be less, still. Thanks for your comment. – Doctor Nelson,
that was fantastic. Thank you. – Thank you. – I’m thinking with
my capture hat on. – Yes. – And I am wondering– and I’m just I’m looking
forward to reading the book and learning more– what was the role of commercial
corporate enterprises in this process? And once upon a time,
recognizing as I say this– and I’ll just leave
the answer to you– we would have thought, well,
the drug companies or biopharma. But in the world that
you’re describing, as you know undoubtedly
better than I do, it’s these networks of capital,
and science, and technology. Venture capital funds,
hedge funds, Silicon Valley, which is the new biggest
player in health care, in combination with these. And so just an
open ended question that I’d just love
to know more about is, what were the pressure
points that you’ve seen in the Obama
administration, including in some
of these groups, Holdren’s groups, and
others for what you might call industrial interests? – Yes. You won’t be surprised to hear
that the industrial interests were significant. Yes, right. But distinctive in that many of
them were for Silicon Valley. So you had, I think, instead
of having the K Street lobby situation, you had people who– in some cases,
young entrepreneurs or VCs from Silicon
Valley– were really engaging with the federal
government for the first time. And engagement, as opposed to
we just want to disrupt it. It was actually, we will go. We will take meetings
and the like. So that was
certainly part of it. Part of what I’ve heard a lot in
the conversations with staffers is that you’ll recall that
the Obama Administration did a lot of commitments. So My Brother’s
Keeper, for example, would be one of
these commitments. Which partly because the Obama
administration was really blocked in getting funding for
things through the legislature, they were, I think,
made to do more and be more creative in these
commercial partnerships. And so they borrowed
this commitment model from the Clinton Foundation. It’s the Clinton
Global Foundation– it’s the private public
commitments model. And do quite a lot of that. But it becomes not so
much a free market, ideological commitment. But I think there’s
that, of course. But also, I think
this happens a lot. The strategy that
they’re left with, given that they can’t get money
out of the legislature, right? Given that in the first
few hours after Obama is first president, Mitch
McConnell is basically like, we will frustrate anything
you try to do, forever. And that has implications
for what they’re able to do and who they must
partner with in the work that they do in science. Also this is a total nerdy,
Daniel Carpenter thing. Given what I’ve learned
from you about bureaucracy, but it also had implications
for how they did their work. So they couldn’t appoint people. Because you couldn’t
get any appropriations lines to appoint people. So the Innovation Fellows,
which I was just like, it was so amazing. The first interviews I was
doing, I was just like, oh, it was so amazing. You guys did this
Innovation Fellows. And someone sort of
said to me flatly, you know why we had to do that? It’s because we
didn’t have any budget lines to make any appointments. But you can appoint a Fellow. The president can
appoint Fellows all day and try to figure out how to
get funding to support them. So it’s partly not a
new story about capture. But it’s partly
about what happens in a presidential administration
with a deeply recalcitrant legislative branch, and how
they try to work around that. – Hi, thank you for this. I wanted to ask you
a little bit more about how the current public
conversation around the ethics of big data is impacting the
way that this ethical framing is taking form. Because if I think back to the
early days of the Human Genome Project and the emergence
of the ELSI agenda, you can see pretty clearly
how it is that the HIV AIDS epidemic that was taking place
in that historical moment, that impacted what people
were thinking about in terms of ethical issues. But here, the connection
seems a little bit looser to me, in that you have a lot of
public conversation about data privacy, and the
right to privacy. While at the same time, you
have a very pro information bias in what’s happening in the
Precision Medicine Initiative. That’s about access to
research as a good, right? So I’m wondering if you
can just draw those links a little bit closer
about how it is that the important
ethical conversations of this historical moment are
shaping what’s going on today? – Yeah, thank you for that. That’s a really great question. And I’m not sure that I’ll
have a totally complete answer, but I’ll endeavor one. So I think we see it a
little bit in the quote that I pulled about Obama
saying, if that’s my DNA, then that’s me. And you see it as well in that
document of privacy and trust principles. So it’s very much about putting
the individual consumer, as data point, data
supplier, in the driver’s seat of making decisions
about privacy and access to their data. Even as we know that that’s
not the legal standard, it very much gives voice
to that as a sort of ethos and as an ideal. And so the ethical
complication is that the ELSI– and the Paul Rabinow
slide that I put up suggests this, as well– as it’s designed, is
really downstream. So you build the technology. And then you decide or
have some conversation about what happens with it. As opposed to a
project like PMI, which would really require a
more anticipatory, or upstream, or midstream approach. Something where you’re
asking questions as it’s happening and engaging
individuals in communities with regards to how they
think about it. So there is a mismatch. I think you’re right. And why the dots
don’t connect is that I think what we expect
for ethics in this moment are different from the formative
ELSI moment, with regards to ELSI information, as opposed
to being solely downstream, after the project
is all but baked. What Rabinow uses as a
distinction that’s very useful is that he distinguishes– I should say
Rabinow and Bennet– between what he calls
cooperation and collaboration. And so for him,
with the ELSI work, cooperation is like
the bioethicists, the social scientists
are supposed to be here working on
a parallel track that does not intersect at all any
of the science or miss any of it up. It’s really like
get out of here. And what they were
imagining when they got involved in the
Systems Bio ELSI Project was collaboration– that
there would be conversations early on. What does it mean
that we don’t yet have laws that allow people to
say that their data is theirs? How are we going to
think about that? What are we going
to do about that? And that was really kind of
forestalled in the project. So I think you’re right. The dots don’t connect, because
there’s a new, larger ethical conversation that is emerging. And I was talking
to students today in the Radcliffe Student
Program about the ethical turn has not only come
to federal science. It’s come to how we think
about society, more generally. We actually think the
ethics of data ethics is a kind of panacea
for everything. And obviously, that’s quite
dangerous and obviously not true. But it also means that we don’t
use words like discrimination, justice, injustice. Ethics fills that
space, as well. So that’s another
backdrop that makes, I think, the ELSI piece a bit
both inadequate for this moment and a little murky. – Thank you for that. – Hi. – Hi. – I’m a biologist and chemist
in the chemistry grad program at MIT. And as biologists, we get data. And then it’s up to us
to decide what it means. And there’s a couple
of places where I’m a little bit
concerned about that. If the milk chugging
challenge is any indication, white supremacists will
take meaningless biological distinctions and
twist and turn them upside down until they say
something that justifies their bigoted bullshit. And then in a more
subtle distinction, biologists tend to take
doctors’ word for it in terms of what is a
pathology, despite the known history, in which
being gay and trans used to be listed in
the DM5 as disorders. And now, we know how
ridiculous that is. And biologists will
continue to do GWA studies, trying to figure out which
genes cause the autism disease without ever questioning
whether autism is actually a disorder. And the vast majority
of autistic people don’t want to be cured. They want to be accepted. So I’m wondering. So let’s say that we get
all of these very broad, genetic studies to happen. People are willing to
give up their data. Was their thought in
the Obama administration about how to keep that data
from being misinterpreted and misused? – Not at all. Your opening sentence was I’m
a biologist and a chemist. And we use this data. And we don’t say what it means. But of course, you
do say what it means. – I said it is up
to us to figure out. – It is up to you. And you are engaged,
particularly if you’re talking about human genetics,
and about human disease, and a practice of creating
classifications and categories that are racialized. And so then when the white
supremacists take up, in another way,
ways that we create algorithms and meanings out of
data, we can be mad about it. Because it’s disgusting. But we also can’t
be mad about it. Because it is another
practice of classification and categorization. That is, I think, part of
what science does at its best and at its worst. So there’s no surprises there. And I think the
cluster of things that you raised are about
the issue of the politics and power of classification
and how to think about that. And I think scientists have
to be upfront about that. That’s part of what the work
is and that these categories travel in the world. A lot of my work has
been how lay people and sometimes not lay
people really take up scientific categories
and use them for all sorts of political work. And the literature on
not only Amy Harman’s reporting in The Times, but
the social science literature, Aaron Pinovsky and
Joan Donovan’s work on how white nationalists
interpret genetic ancestry testing– sorry to say, I guess,
as a social scientist, happy to say that the mechanisms
that I describe in my work with African-Americans
are the same mechanisms. That’s the same categories
or those same schema in which ways people are
making sense of what it means. It’s negation, magical
thinking, acceptance, sort of drilling down into the data. They’re the same kind of
gestures, unfortunately. – Thank you for
a wonderful talk. Janet Rich-Edwards. I’m an epidemiologist here,
at Harvard, and this year, a Radcliffe Fellow. – Great. – And my question is about–
this feels very internally domestic facing for the US. – Sure. – And I’m curious about,
during this administration, attempts to coordinate, debate,
discuss with other countries. And this feels
like it’s becoming even more relevant, for example,
with the recent gene editing of human embryos from China. I’m just curious about how
the administration thought about that. – I don’t know. I haven’t actually
looked into that. If there are others who know
more about it, do let me know. The thing about
federal science is it’s so nation state obsessed. Even one of the
examples Jennifer– of how the Personalized Genomics
Act of 2006 to 2007 sort of uses the phrase of
securing genomic medicine for all Americans. It’s very much kind of a
nationalist, sovereign project around genetics, even as we
understand these things to sort be global and planetary in
their scale and implications. I certainly wondered, actually,
what an Obama administration would have said about lots
of contemporary controversies in science, even around the
issue of Cambridge Analytica, things that lack a
regulation around big tech, and certainly with
the gene editing. It’s hard to know. I’ll say this. I was a witness,
or gave testimony, or had a conversation with
some colleagues at the National Academies who did an NAS
report on gene editing, and germline editing, and trying
to distinguish between those and what might be done. And even people in
that room, who I think knew better and think
about these things on the global scale, in
structure of the NHS, it’s a kind of
national conversation. So there would be gestures such
as if we changed the germ line, we are changing all
of human population. But somehow, that then
could be captured back into a conversation about
science in the United States. So I think in these
kind of federal bodies, we do a disservice to
what are planetary issues, as you suggest. – Thank you so
much for this talk. I think I’m very
persuaded by the question of ethical framing or
the way that you’re describing ethical framing. I wonder whether
you could juxtapose this kind of ethical
framing around medicine, and technology, and
the technologies related to this
particular program, particularly with the Obama
administration’s drone program. Because in the Obama
administration, in 2012, they describe drones
as, specifically, ethical. That was the language
that they used. – Yeah. – And so it seems
to me that there is a very interesting
politics around ethics that’s part of Obama, which I would
love to hear just how you think about the specificity,
here, but also juxtaposing those
different ethical contexts. – Don’t leave. Because I’d actually like to
have a back and forth one about this. Something that just
happened around drones, I’ve thought about this. And I think when I’m
writing up the AI piece, I will write about drones. But the news last week is
that the Trump Administration is no longer going to
count drone deaths. So that was a moment
where I thought, was it ethical to
count drone deaths? Do we wish that we had an
Obama Administration that thought that they were doing
some sort of ethical exercise in the fact that
they were offering some sort of public
accountability to automated death squads? And so I don’t have, I
think, an easy answer. to that. Certainly, that’s not ethical. And I’m not even sure. I use framing, and
I use performance, because I don’t want to
suggest in a normative sense that this is ethical. But that we have reached
a moment as a society that if you want to advance
certain scientific endeavors, post Hiroshima, post name your– Jacques Ranciere has this
essay on the ethical turn in politics. And for him, it’s a temporality
that’s post atrocity. It’s any post atrocity turn then
becomes the ethical politics. So I would want to
forestall the use of ethical as a normative claim,
but understand it as a necessary narrative
of legitimation or a necessary practice
of legitimation. – I think it’s exactly correct. I just think there’s
something interesting. Because I think he puts
himself very forward in this kind of ethical framing. You didn’t see
Obama that much when it came to the drone warfare. – That’s right. No, I think that’s– well– – Well– – –yes and no. He wouldn’t be having a
summit on a stage talking about the misdeeds of the past. But there are some conversations
with him about the drone stuff. [MUSIC PLAYING] – Join me in thanking
Doctor Nelson for that wonderful lecture. [APPLAUSE] [MUSIC PLAYING]

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